I heard Wade exclaim this today as they were playing some kind of traffic cop vs. motorist as Rutger (cop of course) was trying to pull Owen over for speeding (in his wheelchair).
Wade, “Run, Owen, Run”
It was a priceless holler to a kid that was doing his best to out ‘run’ the law with a joystick.
I think that was what the Picnic was all about, right? That feeling of running, the wind in our hair, the miles behind our feet and the crowd cheering us on. Yes, we ran on July 27 and this time the law did not win, Owen did. We raised well over $30,000, another record year for us to outrun Duchenne and derail it.
Thank you from the very depths of our soul. You keep us up, you keep us positive and you keep us believing that we will prevail. God Bless you all!!!
Our inaugural Cycle in September Iron Horse Ride is 9.15.13. We look forward to a beautiful Sunday morning / afternoon to celebrate cyclists of all speeds and skill hitting the Cleveland Metroparks for our attempt to derail Duchenne one peddle at a time.
This historic event cannot happen with you. Click the poster to print and share
Please sign up as a cyclist (family friendly too!!) on our Event Page Cycle in September or sign up to volunteer or sign up to just come for lunch (yep we need a count so we don’t run out of food).
Help make this a success
So this is the hard part of this update.
........ Hope ........
......... FDA .........
.......... New Drug Approval ........................
So many of you bled your pens dry writing letters for us to the FDA regarding Eteplirsen and accelerated approval this year.
We have been a bit silent on this since the news came out a few weeks back mainly because we just don’t know how to take it.
We (JOA) has not been given a clear answer, but it seems that accelerated approval will not happen.
However, the FDA gave the nod to Sarepta (the makers of the drug) to apply for a NDA or New Drug Approval in the ‘first quarter’ of 2014.
As Pat Furlong, President of our beloved PPMD, stated this about the filing for NDA
“Today is a landmark day for the entire Duchenne community. Not too long ago, the Duchenne therapy landscape was a barren field with little to no life. Thanks to a commitment to our patients and the field by the U.S. government, international governments, the venture community and industry, this landscape has changed markedly to the point where today we have the announcement for a planned first-ever filing of an NDA for Duchenne.”
As I told Pat, I feel much like Veruca Salt from Willie Wonka. “I want it now!”
But 2014 is not today
And if it is not today, that means it is not helping Owen’s rapidly decreasing muscle world to STOP decreasing.
So thank you – you were heard, we were heard – and not to belittle all the amazing work done. To me as the mom that has to watch JO’s fears climb daily,
“I want it now.”
Yes, it is selfish. But perhaps that is what I need to be to continue this quest to derail this murderer.
Hope, Owen, Hope and with that we will also Pray.
Run, Owen, Run….
Love you, Owen, Love
God bless you all
PS ~ Watch the progress of our Marathon Mom’s Elsa Kilbane and Brandi Rucinski as they prepare for their Marathons for John Owen…. Also look for a Dinner Date Night for these great runners… where a portion of your dinner bill will go to their efforts … YEE HAW